After many years of saying no - I've given in and start Hydroxycarbamide today. My poor veins have had enough, and venesection, even with the vascular scan team hunting for a decent vein became impossible. The doseage I've been given is 500mg seven days a week. I've no idea whether this is a common place to start. Does it sound 'normal'?
I've decided to start taking them this evening before I go to bed as it's the time I take the majority of my meds, so easier to remember to take them.
One question I forgot to ask, and I don't want to bother the already busy team with a phone call, is... Can I still drink alcohol? I'm not talking going out on a mad crazy booze filled night (I haven't done that for a least 20 years) I'm thinking more a glass or two of wine - with Christmas & New Year celebrations only a few weeks away I'm definitely going to be partaking (If I still can)
Thanks in advance.
Kari.
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Kari1961
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Hello kari - yes 500mg is the lowest dose + that’s what I take each day - I also take it at night + though I’m not much of a drinker, I’ll be having my crimble tipple of choice as usual while I’m wrestling with a turkey dinner! Hope hydroxy is ok for you (I know there can be ‘issues’) + you may need a few weeks to adjust but it works for me (I’m ET JAK2+) and I’ve been on it (albeit reluctantly at first) for the last 3 years.
Hi Kari, I hope you get on ok with the Hydroxycarbamide, it is a bit daunting when you have to start them, so good luck. And yes, you can drink alcohol in moderation whilst taking Hydroxycarbamide, but it is recommended not to exceed the weekly limit of 14 units, and also to remember that because alcohol can cause dehydration, and it is important to avoid becoming dehydrated if you have a MPN, make sure you stay well hydrated. So, yes you can still enjoy your Christmas tipple. Best wishes, Maz
Good luck, I’m taking my first dose this evening also. I’m crossing fingers for both of us that it goes smoothly and with minimal side effects. Hopefully lower platelets are in our near futures!
Ohhh Charlieapple2018 - We're Hydroxy buddies. Definitely fingers crossed for minimal side effects - although I don't need or want lower platelets. Strangly my platelets are always fine. My problems are HCT and red cell count.
I have ET JAK 2 positive diagnosed since 2013 and take 500 Hydroxycarbamide daily, and a thousand at weekends, Aspirin, and numerous other tablets I take mine in the morning and evening as some work better at night e.g, Thyroxine when I wake up, Hydroxy and Aspirin after breakfast, Omeprazole at six o’clock or before I eat, and my blood pressure tablet on going to bed, this works for me and by me spacing them out they don’t interact with each other, but that’s just me. All my blood readings have all been in the normal range, and my Haematologist is always very pleased with me and tells me to keep up the good work.
Also I still enjoy the occasional drink, but as alcohol can be quite dehydrating I also drink at least 2Ltrs of water a day or more this helps with flushing any toxins out that build up in the body and keeps you well hydrated which is a must even if you don’t drink.
Also make sure you eat plenty of fruit, vegetables and fibre, this is an important part of keeping well, and if you can daily exercise is a must, but it’s not always convenient so a few stretches in the morning or a brisk walk is also good for the mind and body.
So I hope you have a good Christmas and a Happy New Year.
That’s the dose I was initially started on. With quick results, it was eventually reduced to Monday to Friday only. I am trying four a week at the moment, we’ll see how it goes.
I have ET (Jak2+) but my haematocrit was above range at diagnosis too. Platelets now in low 300s and haematocrit averages 42.
Thanks Mary - Hct at .42 will be perfect. For the past few years mine has been between .47 & .50 every six weeks after venesection. Fingers crossed... and as you said "All I can do is give it a go"
That’s the dose I started on 6 years ago. I now take 500mg Monday to Saturday and 1000 on a Sunday. My last venesection was 18 months ago. I’m sure you will see a difference in your hct.
I have been in HU for 9 months. I was very strict with my diet at first but loosened up over the summer. During that time I went on vacation and probably.....no definitely had too much alcohol. I made sure to drink a lot of water. I survived but I did feel run down after a while. I am back eating right and very minimal alcohol because it makes me feel better. I think you will be fine through the holidays but I’d suggest you plan on treating yourself well afterwards.
That's how I'm planning on coping with it during the holidays. I'm not going to overinduldge, I'm going to have a little bit of what I fancy and 'listen' to my body.
I hope everyone in this feed responds well to your new changes. I was very reluctant to start HU, but finally agreed Oct. 2018. Started 500mg just Monday, Wed., and Fri. I had phlebotomies in Nov., and again Feb. In Jan 2019, upped my dosage to 6 days a week. That’s when amazing changes happened for me. I got more energy, felt better, less blurry vision moments, many improvements. My blood counts also became stable in a range my specialist says is acceptable. Since Aug., I get blood tests every 3 months; my next one will be in Feb. That means at least one year my veins have been set free! Still taking it day-by-day, but HU (even with some negatives) has given me a great year! I’m sure with some tweaking, you’ll find the right dosage for you, then I hope it will give you a great 2020!
I started HU November 2018 on 500mg daily (PV jak 2 mutation) and this has been increased twice since then and now I'm on 1g 4 days a week and 500mg mon/wed/fri. Initially was terrified at the thought of taking it but thankfully minimal side effects and it has given me back some energy, less brain fog etc. I wanted to wish you well with it, hopefully it will work for you too
My husband was the same as you he was sick of all the venesections which then made him iron deficiency.
He started off on 500mg 7 days a week.
It says drink in moderation we usually have a couple of glasses of wine on a weekend.
He's on ruxolitanib now as his pv progressed to early MF last year.
He hasn't had a venesection since January.
When he first went on hydroxy it reduced his venesections to 4 a year previous to that it was fortnightly or monthly far too many.
He had no side effects whatsoever off the hydroxy he was put off it because of it being a chemo it frightened him. In all its made a difference to his life and would recommend to people not to read side effects.
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